Spencer is doing really well with his G-tube. He has spit up a little, but it's expected at first. It's an interesting but completely gross piece of medical equipment. He can push the milk back out of it if he passes gas or is crying, which when you think about it is kind of gross. If you aren't careful, when you open up his spout(?) his last meal can also leak out a bit. It's a lot easier to use than the ng tube, but requires more care which we are learning.
We are waiting for his follow up sleep study, and hopefully if that goes well, we will know if he gets to come home or not. If he does badly, he could be in there a lot longer.
We managed to get into the hospital's social security workshop. Applying for social security sucks. I don't think I would be able to do it without being able to attach his medical records. I guess we'll see if he gets it. We are also applying for financial assistance through the state and the hospital. He'll be able to at least get institutionalized medicare for anything after hospital stay day 31, which will cover his surgery.
Monday, April 26, 2010
Monday, April 19, 2010
Surprise and surgery
Spencer had his G-tube placed today. I think I'm taking it harder than he is. We decided on the G-tube because we feel like his eating difficulties weren't going to solve themselves in a reasonable amount of time. Plus, who wants a tube sticking out of their nose all the time? I feel like we made the right decision because his eating has actually gotten worse instead of better.
The surgery went fine. After the surgery, they looked at his airway. The doctor concluded his small chin is the main source of his breathing issues. After he heals from surgery, they are going to re do his sleep study he had a while back, but this time with proper oxygen support. We're really hoping they don't decide to do a jaw distraction.
The surgeon was going to attempt his circumcision, but didn't because the baby's urethra exit hole (I'm a girl, I don't know what the parts are called:) may be in the wrong position. Protocol states if the surgeon thinks it's iffy, then not to mess with it and recommend a consult. While it's probably nothing, it still makes me paranoid.
I took my husband home after Spencer made it back to his room. He worked overnight the night before and didn't get much sleep the day before, plus had his own surgery last Friday (What a month, right?). I went to buy a preemie outfit, which I will discuss in a moment, and then back to see the baby. His IV had become misplaced and Spencer started to wake up. He opened his eyes, which really surprised me because last time he was sedated he slept for two and half days. He looked relieved to see me. He can't really cry because the tube, and his breathing is silent which is creepy for me. He always makes noise because of his floppy airway.
He still has a breathing tube down his throat which they will slowly wean him off of. He has been sucking on it like his pacifier. He probably thinks it's awesome because it's always there. He can't keep a normal pacifier in his mouth because of suction issues, so either has to have it held or somehow propped up against his mouth. I'm thinking about sewing a pacifier onto a beanie baby once he gets home. They have something similar at the hospital, but it has a green nipple pacifier on it that he doesn't seem to like very much.
It's been a stressful and long day. I'm glad my little boy is ok, but it sucks that he has to go down this road anyway. At least he will be strong.
His future wife was born yesterday. Her mother was only 30 weeks pregnant, so it was a surprise. We are very excited at meeting her hopefully tomorrow. The baby and mom are both doing great. For being so small she is regulating her body temp and is breathing on her own. We are very relieved that everything is ok and I went to buy her an outfit. She hadn't even had her baby shower yet!
The surgery went fine. After the surgery, they looked at his airway. The doctor concluded his small chin is the main source of his breathing issues. After he heals from surgery, they are going to re do his sleep study he had a while back, but this time with proper oxygen support. We're really hoping they don't decide to do a jaw distraction.
The surgeon was going to attempt his circumcision, but didn't because the baby's urethra exit hole (I'm a girl, I don't know what the parts are called:) may be in the wrong position. Protocol states if the surgeon thinks it's iffy, then not to mess with it and recommend a consult. While it's probably nothing, it still makes me paranoid.
I took my husband home after Spencer made it back to his room. He worked overnight the night before and didn't get much sleep the day before, plus had his own surgery last Friday (What a month, right?). I went to buy a preemie outfit, which I will discuss in a moment, and then back to see the baby. His IV had become misplaced and Spencer started to wake up. He opened his eyes, which really surprised me because last time he was sedated he slept for two and half days. He looked relieved to see me. He can't really cry because the tube, and his breathing is silent which is creepy for me. He always makes noise because of his floppy airway.
He still has a breathing tube down his throat which they will slowly wean him off of. He has been sucking on it like his pacifier. He probably thinks it's awesome because it's always there. He can't keep a normal pacifier in his mouth because of suction issues, so either has to have it held or somehow propped up against his mouth. I'm thinking about sewing a pacifier onto a beanie baby once he gets home. They have something similar at the hospital, but it has a green nipple pacifier on it that he doesn't seem to like very much.
It's been a stressful and long day. I'm glad my little boy is ok, but it sucks that he has to go down this road anyway. At least he will be strong.
His future wife was born yesterday. Her mother was only 30 weeks pregnant, so it was a surprise. We are very excited at meeting her hopefully tomorrow. The baby and mom are both doing great. For being so small she is regulating her body temp and is breathing on her own. We are very relieved that everything is ok and I went to buy her an outfit. She hadn't even had her baby shower yet!
Wednesday, April 7, 2010
Two steps forward one step back
Update on the Spencer. He is fairly cranky, as I would be too.
He has the following:
Heart murmur
Floppy airway
Cleft Palate
Recessed chin
Club Feet
Slightly defective hands (as far as I know there is no medical definition)
Extra eye folds
Undesended testicles
Low set ears
hyperthyroidism
and he is absolutely perfect. I would be pissed to if I had people poking at me all the time. He is still on oxygen. They were going to wean him off of it, but he is getting surgery to have a g tube placed soon, so it was kind of silly to. Everything in his brain is in the right place, so hopefully he doesn't have any MR. I don't think he does. He has a lot of things in the world figured out.
1. If screaming doesn't work, then go to sleep. He had a scope down his throat the other day, and screamed bloody murder. He figured out that wouldn't make it stop, so he fell asleep instead.
2. Mommy is a sucker. Look sad and pathetic and she will pick you up.
3. Boppys are the most comfortable thing on the planet.
I put a mirror in his crib the other day, and he immediately starting looking in it. He also can lift his head up pretty good for a three week old.
Found out today that he may need to get surgery to get his chin to grow. I think they are debating it. So we'll see. We are very eager to get him home, even though it still seems like it will be forever away.
He has the following:
Heart murmur
Floppy airway
Cleft Palate
Recessed chin
Club Feet
Slightly defective hands (as far as I know there is no medical definition)
Extra eye folds
Undesended testicles
Low set ears
hyperthyroidism
and he is absolutely perfect. I would be pissed to if I had people poking at me all the time. He is still on oxygen. They were going to wean him off of it, but he is getting surgery to have a g tube placed soon, so it was kind of silly to. Everything in his brain is in the right place, so hopefully he doesn't have any MR. I don't think he does. He has a lot of things in the world figured out.
1. If screaming doesn't work, then go to sleep. He had a scope down his throat the other day, and screamed bloody murder. He figured out that wouldn't make it stop, so he fell asleep instead.
2. Mommy is a sucker. Look sad and pathetic and she will pick you up.
3. Boppys are the most comfortable thing on the planet.
I put a mirror in his crib the other day, and he immediately starting looking in it. He also can lift his head up pretty good for a three week old.
Found out today that he may need to get surgery to get his chin to grow. I think they are debating it. So we'll see. We are very eager to get him home, even though it still seems like it will be forever away.
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